"always smiling and always will"...a moto of mine that has stuck with me for years. Loving life since my transplant! Taking on various challenges from the Bupa Great South Run; UK, European & World Transplant Games in various sports; travelling the globe & sailing in the Clipper 11-12 Race. This year competing with Team GB in the World Transplant Games, South Africa

Jussie sails with Clipper 11-12

I sailed the last leg (8) in 2012 - USA,Nova Scotia,Ireland,Netherlands & UK. Travelling 4,000 miles, approx 22 days at sea, with 4 races in this leg.

Sunday, 20 June 2010

My shortest, quickest, less waffled blog update.....I will not talk much ;)

My double-lung transplant was July 9th 2006.

The UK Games are every year, and the European Games every 2 years.

In 2007 I did my first ever UK - Edinburgh Transplant Games and won nothing..hahaha!!

In 2008 I did both the UK Games - Sheffield and won 1 bronze + European Heart & Lung TX Games -France, whereby I won 3 silvers.

In 2009 for the UK - Coventry Games I won 2 bronze and 1 silver.

So....this year, 2010, I will be competing again for European Heart & Lung Games - Sweden and for the UK Games - Bath. In theory, each year I have achieved and done better. I tend to do better at the Euro Games, as competing against fairer levels, as heart/lungs are not on the same level as smaller organ types transplanted (at the UK Games, such as kidneys,livers,small bowel). I really would like therefore to up my achievements in Sweden and get my first ever Gold, and for the UK to keep up with bronze/silver (Gold for me at the UK, near impossible competing with smaller organs...grrrrr....lol).

Its not about winning, as taking part really IS the achievement and being alive. But, I train hard and like the weight of medals ;) Also for those asking, I am away from end June-beginning July for whistlestop travelling in Norway, then onto Sweden wherby, I will travel with the Norwegian Transplant Team into Sweden. Happy Days. See you all when I get back & will blog update with piccies when I get a free moment. 6 weeks after returning back home - in August the UK Games begin & so will my training again!! x x x

Saturday, 12 June 2010

Okie dokie here I am on this day (as below) red curly locks infront of another art painting of mine. My life is stored with art here,there and everywhere. My flat+my parents home, are both resembling that of galleries! Family/friends have my art work (the lucky ones given a painting or bought -not so lucky ones....hahaha), some under my couch,spare cupboard....parents loft (..aren't parents for storage space....) tee hee and so forth. Oh the days, for all this work to be really discovered and worth a bob or two :)

So excuse my cheesy grin, and now onto other news......And now unto the Abba part.....hmmm...where do I begin? The Abba Sisters, I first saw them at Bengal Paradise (an Indian restaurant) with my parents on a night out for a curry with them. WOW!! Chicken dansak and a sing-a-long with 2 girls wearing Abba costumes,wigs and dancing/singing sensation! So, totally different, and like nothing I've ever seen before. Both ladies making the audience interact with dancing, singing back into their microphone. Not only singing sweetly but humour within their act, and hearing many a crackles inbetween slurps of drink and mouthfuls of curry/rice.

I was so impressed by them, that stayed in contact and hoped to organise a suprise for them to entertain at my Dad's 70th back in March. To cut a long story short, it never happened, and I wanted to bear them in mind for any future events...or charity events that I may organise on a large scale. However, my parents still in awe like me, and we do like a good gossip...so starting the word, to which we mentioned them to another restaurant called, Nolita's - a yummy Italian style place.

And great news to hear, that Nolita's booked them, and so we all wanted to watch them perform again. I would like emphasize, that the girls are very talented and also perform other acts, please take a look at their website below. Why not check their website, and think if you are able to book them, you won't be disappointed!!!

Here is my Dad (in black) having a boogie with the Abba girls (above) and whoopsie there is me with the chicks (below)

Friday 11th/Saturday 12th

This weekend, was spent in Nottingham for the annual LAM meeting, whereby the few lam ladies that there are (or who can make it) attend this get together for social, fun, and updates on lam disease...drug trials, research, fundraising etc...

I drove up on the Friday night, and decided would join the other lam ladies, family/friends for a meal in the evening. Normally, I'm too tired and thought this year, as I was driving from a location only 2 hours away would be fine. Ha! Typical....I was stuck on the m1 for 4 hours!!!!! And, I only arrived at 6.50pm, and a taxi was collecting everyone from the hotel to dinner at 7pm! Talk about a quick turn around and being extra.tired.com!!!!! But, I still came out, and glad I did to actually spend more time getting to talk with lammies never met before.

The only time, I was quiet.....was as in the photo below......... stick a burger bun in my mouth...YAY...Jussie is silenced!!! ;) and here is what the meal started off as, yummy!!!!

So, finally I crashed about midnight, and woke up from a not-so-good sleep (part of my life now)...breaky done, and time to get to the meeting point. Very informative day and tiredness got the better of me (as usual) so sneaked out to crash in my car for 20mins.

I also brought along some of my art work + jewellery and for 35% of sales to go for LAM Action. Three of my necklaces were sold and a piece of art (and happy it has gone to a good home).

It was such a lovely day, and as said besides the history/updates of LAM, nice to chat with other lammies and give each other hope & encouragement. Then a 3 hour drive for me to get home. Quick service station break on route - coffeeeeeeeee!!!!!

Monday 14th

So today, (Monday), I was invited nearly 1.5 years ago to attend the Birthday party for the Women's Institute as a guest speaker, from being seen at a Rotary Club talk on Lam+Organ Donor Awareness. I must admit, I was quite flattered to be asked to go to an event so far in the future, then for it to be finally upon me! I drove to Clacton-On-Sea to a little village, and went into a hall with about 100 women (just aswell I'm not shy) as they were all my audience!!

Some people say to me, how can I talk to so many people? Or, I couldn't do that...but, I love talking.......if you haven't already noticed, and don't have stage fright so to speak, and enjoy talking to the mass, especially about something so true and close to my heart. Also, knowing that this will help spread the message about what I do & help raise awareness.

Below is my promo table with information on being a donor + Lam, and also photos that show my journey before and after my transplant for the ladies to view.

And if you look closely here, you will see me infront of the curtains with a microphone speaking out. All eyes were on me, at times, I did a little dance..put humour into my talk..to try and deviate from the 'sad' parts that I had to say + were necessary to outline my plight fighting for life. I really don't like mentioning all the hard times, lung collapses, being in a coma etc.....but, necessary to witness how a transplant can transform a person's life. At times, I felt like a comedian.....was heckled a couple of times...loved the banter and replied back to questions asked with a smile.

Afterwards, I was approached on how moving my talk was, and amazed about all I had endured, and people commented on my positive attitude. I was quite overwhelmed, humbled, and plain happy that tonight really DID make a difference. One lady even said, "You are nicer than any celebrity"......I said, "Can I have that in writing please" and we both laughed, though knowing she was being sincere. Guess, I never expected a reaction like that. Also for some people telling me, I won't grumble any more, or even complain about a cold.....

So, another evening done and dusted....drive home now...feeling lil emotional..........

Thanks for reading this.

Next post, hopefully me winning GOLD in Sweden for the European Heart & Lung Transplant Games (June 25th-July 5th)

Saturday, 5 June 2010

Thanks to the inital Duncansdream set up by Duncan Bannatyne, and then after Peterspeople..on Twitter. I have made new followers..and would like to thank you firstly on my blog!

Here I am, a piccie taken on a night out a couple months ago. Just an ordinary woman? Perhaps ....yes, on the outside.....but on the inside - no....so, welcome to my real world!

I'm somewhat random, spontaneous, like laughter - humour makes me smile every day and keeps me buzzing. Probably a little different to most people you may come across on Twitter. Single - but happy, unless a funny handsome man would like to sweep me off my feet...lol

I defy the odds against living with an illness in my system, breathe with someone else's lungs! And almost 4 years, I had a double-lung transplant. I live my life and do everything and more than maybe the average person who simply plods along.

I do all and more, Docs say maybe I can't or may never achieve! I set new boundaries/goals to achieve each year I'm alive. I DO find some things hard, but my determination to succeed pushes me to keep me going. I am stubborn somewhat and sometimes pay for it later, when my body is absolutely exhausted beyond belief. But.....I rest up for aslong as I need to. Then, go with the moto...tomorrow a new day and start again :)

I don't have full lung function even since my transplant, and maybe get breathless sometimes...but as said rest a bit, then off I go again in my own happy world. I do not let anything get me down and live with a very positive attitude!

Grateful to breathe every day - is truly amazing, and something most or all take for granted! I think of my donor every day and hope that person is proud of my last 4 years. Transplantation is NOT a cure, but, an extension for me. I have side effects with my medications now, but just get on with life and don't moan. I may need a kidney transplant too, as the meds eventually affect the kidneys from not working. Rejection may occur, my illness may decide to ravage my new lungs, infections even colds,coughs,chest infections affect me so much and I suffer more than a person who has an immune system. I take lots of meds including immuno-suppressants to help fight for me and keep me tick tick ticking alive :)

I live for today, and don't sit around waiting to do things......I try and set out to travel to new countries, compete in sporting competitions, meet new people - like making new friends, artist, media campaigner, and a little bit insane (in a good way) xx

In a few weeks, I will be going to Sweden to compete against 21 other European countries in the Heart & Lung Transplant Games, then when I return - 6 weeks later in the UK Transplant Games (all organ types). The UK Games, I find more difficult as competing with people, as I call them the kidney girls, who have no breathing issues, and sports no issue. I hope to win medals..hahahaaaa...YES...a little competitive!But, if I don't...I'm still a winner, as I AM ALIVE!

Well, thats me in a brief outline...so Hello and enjoy being my friend, and likewise I look forward to get to know you too.

Contact ME

World Transplant Games

Website used from 2005-2009

About Me

I am very lucky to be alive after a double-lung transplant in July 2006. I suffered the rarest lung disease called, Lymphangioleiomyomatosis (Lam). I kept fighting for my life and trying to breathe each time my lung collapsed (15 times). I used to be on 24 hour oxygen to help me breathe and also wheelchair bound. At one stage I ended up in a coma (3weeks) and remained on life support for almost 2 months. I had to learn how to walk again with a zimaframe, and start to re-build my life/confidence/strength up. I want to enjoy my life with the extension this transplant has given me. My journey post transplant has been challenging with health issues, but, I try to remain as positive as possible.